Pubdate: Sat, 26 Dec 2015
Source: National Post (Canada)
Copyright: 2015 Canwest Publishing Inc.
Author: Tiffany Crawford
Page: A10


Parents Take Unconventional Approach to Treat Children With Epilepsy

Mention Taylor Swift and five-year-old Ella's eyes light up like the 
Christmas tree in the corner of her Surrey, B.C., living room.

The tree scrapes the ceiling and Ella is eager to play with the 
decorations, but her parents have set up a barricade so she can't 
reach the branches.

That's because the girl has severe epilepsy and autism and, though 
she is nearly six, the cognitive ability of a toddler. She doesn't 
seem to mind, as her attention is soon diverted by a suggestion she 
sing a song by Swift, her favourite recording artist.

Yet the strong-willed Ella has other ideas. "Meatballs," the bright 
little girl exclaims, and the family launches into a rousing verse of 
On Top of Spaghetti.

A year ago, Ella would not have been singing about meatballs, 
giggling as she sways her hips, or scribbling in her Dora the 
Explorer colouring book. She would have slept all day, her few waking 
hours spent groggy and depressed because of the medication she takes 
to control more than 100 seizures a day.

The girl still takes a cocktail of anti-seizure pills, but her 
parents, Kim and Rob Turkington, have added two shots a day of 
marijuana oil, a medicine they say has made her more alert, reduced 
the number and severity of seizures, and allowed her to develop 
speech and other cognitive functions.

They're not alone. Frustrated with failed pharmaceuticals, more 
parents are turning to cannabis oil, ideally one low in 
tetrahydrocannabinol (THC), the psychoactive agent, and high in 
cannabidiol (CBD), one of hundreds of compounds found in the 
marijuana plant believed to stop seizures.

The family of Summerland, B.C., toddler Kyla Williams, an epileptic 
child who solely relies on CBD oil to stop seizures, has a similar 
story, as does Simon Fraser University lecturer Sherri Brown.

They share the same caveat: Cannabis is not a miracle drug, but can 
significantly improve the quality of life for some children.

Like Ella, Brown's son, Quinn Barker-Brown, 5, became much more alert 
after the family last year began using the same brand Ella takes, 
called Charlotte's Web, a strain that has a 28:1 ratio of CBD to THC.

The problem is Charlotte's Web, considered among parents to be the 
gold standard in kids' cannabis, is not available in Canada, so they 
import it from Colorado.

It became legal to buy CBD oil from a licensed producer this summer, 
after the Supreme Court of Canada ruled Canadians have the right to 
buy derivatives of medical marijuana. However, it wasn't available 
until this month when an Ontario company became the first allowed to 
sell cannabis oil by Health Canada.

Many parents still struggle to find a consistent strain low in THC. 
They buy from unregulated dispensaries, only to find out by trial and 
error the product was too high in the psychoactive compound.

No one wants their kids tripping out. That's why many B.C. parents 
have in recent months formed a loose network, sharing tips on CBD 
dosage and which dispensaries stock the most suitable products for 
children, while they wait for science and law to catch up with demand.

Victoria-based dispensary Trees held a packed seminar in Richmond, 
B.C., in September, and plans to hold another in February on 
Vancouver Island because the response has been "overwhelming," says 
Alex Robb, community liaison for Trees.

Kyla's grandmother, Elaine Nuessler, a pioneer in advocating medical 
pot for kids with epilepsy, has also been holding seminars this past 
year. She has spoken to hundreds of families with children suffering 
from chronic disease who have expressed interest in cannabis.

While she can only describe her experience with Kyla's epilepsy, 
Nuessler has heard from parents with kids battling a range of 
diseases, from spina bifida and scoliosis to arthritis and cancer.

Even a few months ago, most parents would not go on the record to say 
they were giving their kids cannabis for fear of losing their jobs, 
or worse, their children. But so much has changed in a short time.

Bolstered by a more pot-friendly Liberal government, and outspoken 
advocates like Nuessler and the Turkingtons, more parents are coming 
forward and saying, "This works for some kids, now let's regulate it 
and provide Canadians with a strain suitable for sick children."

"At one point it was legal for my five-year-old to smoke dried 
marijuana, but not give her the (CBD) oil. That's ridiculous. Who is 
going to give their kid a joint?" says Rob Turkington.

As he explains how the cannabis oil has "given us our little girl 
back," he is overcome with emotion. Ella is feisty and artistic, he 
says. She colours, sings, dances and now attends kindergarten at the 
same school as her big sister.

The Turkingtons, who say they have never experimented with marijuana 
themselves, decided to give cannabis a try for Ella after they saw a 
documentary about the healing qualities of CBD. But it wasn't easy at first.

"Dosing was horrible. You are on your own," says Kim. "At first you 
just rely on Facebook pages with other people doing the same thing, 
and friends who are doing the same thing with their children. It was 
quite difficult."

And it's not cheap. A bottle of Charlotte's Web costs about $430 and 
lasts about two months in Ella's case. And the costs are expected to 
mount as the family experiments with a higher dose.

Mary Connolly, Ella's neurologist at B.C. Children's Hospital, says 
it is common for anti-seizure medications to fail. Seven medications 
failed to work for Ella before her family turned to CBD oil. Quinn, 
who has epilepsy, autism and global developmental delay, switched 
medications four times.

"Quinn was in a fog and dopey because of the medication and seizures. 
It got worse when we started meds. He was slamming into walls, he 
couldn't stand up," said Brown, who spoke at the Richmond seminar and 
estimates 60 to 100 families in B.C. are experimenting with cannabis for kids.

Connolly does not prescribe cannabis, but she will monitor children 
taking CBD in exceptional cases.

After Brown received the CBD oil from a Vancouver Island dispensary, 
they began to see a reduction in Quinn's seizures. And when they 
switched to Charlotte's Web there was significant improved cognition.

"He's brighter, more attentive, his skills have returned. He will 
actually say a few things. He started saying 'daddy' again and 'mum' 
so that's really great."

Still, despite these parents' success stories, the medical community 
has taken a stance against prescribing marijuana oil for children.

On Dec. 14, the Canadian Paediatric Society published a position 
paper on kids and cannabis, saying there is insufficient data to 
support either "the efficacy or safety of cannabis use for any 
indications in children," and may even cause harm in some conditions.

"The potential for cannabis as a therapeutic agent must be evaluated 
carefully for both efficacy and safety in treating specific pediatric 
health conditions," it states, and goes on to say that where cannabis 
is offered in exceptional pediatric cases, physicians should evaluate 
individuals for efficacy and risk.

Kyla, who takes 2.1 mL of Charlotte's Web, three times a day, went 
from 300 seizures a day to virtually none. She's also starting to 
take another CBD oil even lower in THC, called Evolution, from the 
same Colorado company that supplies Charlotte's Web. Nuessler said 
the ratio of the new product is 46:1 CBD to THC.

Her success story has been widely reported in the media, and Kyla's 
response to cannabis has become a beacon of hope for other families.

Brown has been doing her own monitoring of Quinn, with help from 
Nuessler, starting with a small amount and recording how it reacts 
with different meds.

"It's not a magic bullet. It's another med and they all can be 
contraindicated. So you have to be careful because they don't always 
interact well together and you have to take the data, and try to 
figure out what is happening with behaviour, sleep, food, seizures 
and try to track all of those indicators of well-being," said Brown.

Before the seminars, and the proliferation of dispensaries and 
compassion clubs, desperate parents would hit the streets and pubs to 
find drug dealers, feeling guilty as they handed over cash to dodgy 
dope dealers.

Now they can go into one of hundreds of dispensaries around the province.

But Nuessler says that doesn't mean parents will be able to find a 
suitable source. While she is an advocate for dispensaries, she says 
unless parents have done their research, they don't know what they 
are buying. The amount of THC on the label may be much higher than advertised.

"Many people don't realize how important it is to have a consistent 
and high quality product. When you are using cannabis on a child, 
they are so sensitive and each child can have a different result," she said.

In Vancouver, there are two dispensaries Brown will recommend to 
parents, though she would not disclose where they are located.

In Canada, marijuana continues to be regulated as a controlled 
substance under the Controlled Drugs and Substances Act. Medical 
marijuana dispensaries or compassion clubs, not licensed by Health 
Canada, are illegal.

As for Ella's family, they'd like to see a cannabis oil developed for 
children that's easier to access in Canada, and more affordable, 
perhaps even covered under provincial medical plans.

"We're way behind the United States in research and we need to catch 
up," says Rob. "This is not a bunch of hippies taking drugs ... These 
are scientists, this is science and we need it for our children."
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MAP posted-by: Jay Bergstrom